Calling for a revolution in the treatment of MPNs?

[JaK2ET]

If you have not seen it already, you might find the following item of interest:

hindawi.com/journals/mi/201...

The subject is MPNs as inflammatory diseases. If I have understood correctly (a big IF), the authors believe there is now convincing evidence that MPNs are the result of a vicious circle in which genetic mutations lead to dysregulated and damaging inflammation, causing in turn more genetic mutations and more damaging inflammation and so on. These underlying processes may drive disease progression from ET to PV to MF and beyond, as well as promoting co-morbidities.

The authors seem to be calling for a revolution in the treatment of MPNs, in which there would be a proactive attempt to tackle the underlying disease processes, with a view to slowing them down or stopping them or even reversing them, rather than passively treating only the symptoms caused by them. This might entail, from the earliest stages soon after diagnosis of ET or PV, the use of medications such as Interferon, Janus Kinase inhibitors (eg: Ruxolitinib), even statins, rather than (for example) Aspirin and Hydroxycarbamide/Hydroxyurea. The hope would be that early intervention would prevent disease progression and leave behind a stable and manageable disease burden; life would be extended and quality of life improved.

The review dates from 2015 but 5 years is quite a long time in this rapidly developing field. I know that some MPNers on this forum are in touch with, or being treated by, leading specialists in the field. Do you get the impression that such a treatment revolution is now happening, or are the ideas expressed in the article still controversial?

In a publicly funded health system such as the UK NHS, I suspect that cost considerations must play a part. I would guess that even low-dose Interferon + Ruxolitinib would cost a lot more than Aspirin + Hydroxycarbamide ... Also, given that MPNs are often diagnosed relatively late in life and may, even with current treatments, not shorten lifespan significantly, there would be a preference for putting funds into diseases that start earlier and are more immediately life-threatening. However, advances in the understanding and treatment of MPNs are likely to be of wider benefit, as the underlying inflammatory disease processes are probably relevant in many other illnesses too.

I would be interested to see what fellow MPNers think about all of this ...

Thank you for reading this far!

[EmeraldA]

I have read before that there is an argument to start a person on interferon when first diagnosed which is interesting. I would hate to get down the road a bit with my diagnose and find out that if I had been started on interferon at the point of diagnosis disease progression and outlook would be better..... Tgank you for posting knowledge is power.

[light]

Thank you for posting this interesting read. I totally agree with this findings, since I heard some more information on inflammation that is considered as contributor for MPN's. I too believe that inflammation is playing a big part in MPN diseases.

[Stephen399b]

Thank you for posting this. I am sure that I haven't understood all of the science, but the conclusions do match with many of my own symptoms.

I was diagnosed with ET, Jak2+, systemic mastocytosis and PMF about 6 years ago. Treated well be an excellent haemo and all counts under control with Hydrox and (firstly) asprin and now clopidogrel, plus H1 &2 antihistomines.

The reason for the switch to clopidogrel was continuing stomach pains and cramps. I have had 2 colonoscopies (oh joy!) , plus the capsule endoscopy which sends pictures as it passes through the gut. They thought I might have had Crohn's but to date have assessed that the long term use of asprin was causing ulceration (even enteric coated).

This article seems to indicate that progressive MPNs are more likely to cause progressive inflamatory conditions, which would fit this. The number of contributors here who say that they have itching, redness etc in toes and fingers surely bears this out. I don't know about additional osteo conditions, perhaps we need to hear from sufferers.

So pleased to hear that genuine new research is being undertaken. Perhaps they need to use this and other communities for more evidence.

[gbeam]

I found this article extremely interesting.

I also have sjogrens syndrome which is one of the other autoimmune disorders they mentioned. Inflammation is one of my biggest issues, but is it ET or sjogrens who knows. I also found the section on statins interesting. I was prescribed mine because I have had quite a few TIA just involving my eyes. My cholesterol is fine, so if always been unhappy taking my statins, but reading that they could help with inflammation is interesting. Over the last month I have been taking mine every other day, whilst also experiencing more pain in my joints, legs and feet and swelling of feet and hands. I will now go back to my original dose for a month and check if there is any improvement.

Hope everyone is keeping well

Gill